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Sunday, July 26, 2009


It is important to have a good schedule. Something to keep you on track and focused on getting yourself, or your child, as healthy as possible. Here are some things to keep in mind as well as things that I do to get myself healthy. I hope they help:)

Come up with a good system that will help you remember to take your pills and do your treatments.
One of the things my mom would do as a kid is rubber band my Enzymes to the fridge,

I love to eat and she knew every time I would reach for the fridge those enzymes would be right there on the handle, and I would remember to take them. It helps to leave little hints for yourself throughout the day also, If you don’t always remember to take your enzymes, tie a rubber band around your wrist that says enzymes. Or if it’s your treatments you forget, write the names of your treatments down on strips of paper and tack them to a bulletin board or keep them in your pocket.

Organization is key, you should have a place, whether it be your bedroom, living room, office, or whatever, for you to do your treatments at. This place should be entertaining for you so that you don’t get bored for the 30 minutes to an hour your on your treatments. My treatment area is in my bedroom(so I can shut the door, mostly because I’m a loud cougher). I have a computer desk set up with my Vest, Nebulizer, laptop and Tv. When I do my treatments I entertain myself by blogging, Twitter or Myspace. And if that’s not entertaining me that day, I usually watch some Tv.

I keep a trash can near by because I'm a big cougher.

I keep my pills throughout the week in mini Ziploc bags thumb tacked on a bulletin board, and each day I just take the pills out and throw the bag away. I put new bags with a new set of pills about mid-week. As far as treatments go, I just do as I said before, I cut strips of paper with the treatments name and place them in the bags.


It is important to have long-term goals, but it is equaly important to have short term goals. Whether they are monthly, weekly, or daily, short term goals give you sort of a boost of accomplishment that keep you going on to the next goal. Daily goals are the best for me. You can start off slow by saying, today I’m going to Eat this many calories, or I’m going to pray for 30mins before bed, or I’m gonna finish all my treatments for the day by 9pm so I can get some good sleep. Whatever your goal may be, set it. And work as hard as you can to accomplish it. You’ll find that the little goals you set today get easier and easier, then you move on to bigger ones like, I’m going to gain 10lbs and 10% lung function before my next appointment, or I’m going 5 miles on my bike at full speed. When you set daily goals your not only giving yourself motivation throughout the day, your also improving your own physical health and mentality. If you have a kid with CF, my mom used to make BETS with me, “I bet you cant eat 2 hamburgers and a hotdog!” You know? Or “I bet you can’t set up your pump before the next commercial goes off.” Whatever you gotta do to motivate your kid, DO IT!

It takes 21 times of doing something to make it a habit. If you can make doing treatments and taking pills fun for 21 days you can make it a habit for your child or yourself. Put on your favorite T.V. show, DVD, if you run a business from the Web, or just like being on the computer, get on the computer! If your little girl likes to play dolls, play dolls with them! If the boy likes trucks, play trucks! Once you make your treatment time and taking your pills a habit, is when its more than what you HAVE to do, it becomes what you WANT to do. Sooner or later your child will say “let’s play dolls!” or “let’s play trucks”, they will WANT to do their treatments! If you have CF and you WANT to get on the computer, train yourself so that when you get on the computer, you get on your treatments, then you will WANT to get your treatments so that you can check your e-mail, or updates on Twitter.

While I'm on my treatments I go ahead and set up my pump!

I use 6 cans of Ensure Plus, 350calories and 13grams of protien EACH!!

Keep track of what you do during the day, so that the next day you know what you did and you can know what to do the next day. Write down what you ate, what time you did your treatments, and the exercise you did, much like my NO EXCUSES blogs. If your wondering why your not gaining weight, or why your PFT’s haven’t gone up, keep a log or a book you can write everything down in, that way you can look back at it and you’ll know if you need to increase your treatments or eat more during the day. Writing it down is also a good way you can tell your doctor what you are doing and he/she can make adjustments on whatever your doing. I kept a log of what I was eating for a full month and kept track of my weight 3 times a day, In one month I gained 20lbs, my doctor was impressed and said I should tell all the Cfers I know, and here I am. So try it!

These are just a few things that I hope will help you out in getting healthy. Please take the time to try these things, they haven’t failed me yet. If theres anything I might have missed or didn’t go over, or if you have any suggestions on how I can improve my routine, feel free to message me at caseyjones343@yahoo.com

Thank You and God Bless!

-Casey Jones

2 Ensures
Cinamon Roll
Shells and Alfredo with ham
3 bbq Ribs
1 Boneless chicken breast
Potato Salad
6 Ensures(on milkdrip)
Today my goal was to ride at least 1 mile on my bike, I knew that I would be at church all day, jumping around so I set a goal lower than usual, unfortunatley as soon as I got home today, I slept. I slept from 2 to 4 o'clock, and had to leave for night service. Once I got home I exercised by running in place for about 15 mins. and did my stretch routine.
7:15- Vest, Albuterol
7:25- Hypertonic Saline(while on vest)
7:45- Pulmozyme
8:00- Colistine
12:45- Albuterol and Pep
4:00- Albuterol and Vest
10:00- Albuterol and Vest
10:10- Hypertonic Saline(while on vest)
10:30- Pulomozyme
10:45- Colistine
11:05- Flovent



Ronnie "Sickboy" Sharpe said...

GREAT blog post! There is so much great information in here that I don't know where to start. Putting a rubberband around the fridge handle=GENIUS! Tell your mom that she is one smart cookie!


CFMama said...

Great ideas!! I'm going to bookmark this so I can implement it. You know, so I don't lose my mind. Hehe

Lil' Chris' Mom said...

I love this post also!! GREAT JOB!! It's a HUGE help:) You've got some great ideas that I'm going to use, thanks:)

Dan said...

Dude, this is so awesome! Thank you so much for this. Now if I can just be this organized, I might be able to get things moving along for my daughter! Thank you!

Anonymous said...

Hey Casey! Looking Good! Keep it up, love mom.
Creativity is CHOICE!!Good job.

Cystic Gal said...

This is awesome and the PHAT BEATS are the best part. I like that your organization systems are great and somehow kind of "CF for the dudes" - LOVIN IT!!! How did you add your music to your site?

I have a post about eminem on mine. I love him when I'm feeling down :)

Cystic Gal said...

I put the enzymes by the chairs I usually eat at in each room (creature of habit). When I sit, the pills go on the right side. When I take em, the pills go on the left side. That way, I know if I took them or not :)

I have found that decreasing the amount of times I have to "go get" a medicine, helps keep me in a good mood. I also put my morning inhalors on my nightstand, so I wake up, take a puff. 15 minutes closer to open lungs :)

I also pack a small "med pack" that has one of each medicine I could ever think of needing. That way, when I realize "oh no, i did not get out a new thing of ____," I have one in the med pack, even if it's a med I don't usually take out of the house.

In the winter, I leave a whole thing of pills in the trunk.

So I'm sort of the opposite of Casey, but I LOVE all his ideas. For me, the less that things can be a separate project, and the more they can be integrated into a "normal" routine, the easier it is for me to remember to follow ALL THE THINGS I'm supposed to do. For example, when I take my night time pills and meds, I lay out the morning ones literally next to my toothbrush. That way, when I brush my teeth I'll see them. :) If they're hidden in a drawer, I might forget in the rush to work to take all those vitamins and such. :)

I love your blog, Casey!